Ameliorating epistemic injustice in practice: Communication strategies in a research project with refugee youth coresearchers.

INTRODUCTION: Many researchers want to include seldom involved groups, such as refugees and youth, in patient and public involvement (PPI), but experience a number of barriers. The PPI research community calls for critical evaluations that are prospective, data-based and conducted by researchers and public contributors together. In this study, we conducted a longitudinal evaluation of a core activity in all collaborations: communication strategies. The aim was to evaluate the communication strategies adopted throughout a research project with refugee youth coresearchers. METHODS: This article is based on the evaluation of a project where refugee youth were involved in the online adaptation of a group-based programme for youth with posttraumatic stress. Behavioural observations and field notes collected during the project were analysed with qualitative content analysis and a readability index, and discussed through the lens of epistemic injustice. The article was cowritten by researchers and refugee youth. FINDINGS: Four manifest categories were identified: Facilitating engagement through coplanning and circumstantial flexibility; Different needs require different channels; It's not just about the channel-facilitation skills matter; Finding a common language opens a communicative flow. In addition, a latent underlying theme reflecting the role of trust was identified: Interactive moments facilitate trust-trust facilitates richer involvement. CONCLUSION: At the core of the identified communication strategies were strengthening relationship-building and actively facilitating involvement. Establishing trusting relationships enabled refugee youth to share input. The communication strategies increased hermeneutical justice by contributing to a common understanding; thus, taking a step towards ameliorating epistemic injustice. PATIENT OR PUBLIC CONTRIBUTION: This article is a participatory analysis of a PPI process; it was written in collaboration between researchers and refugee youth coauthors, who were all previously involved in the evaluated project.

Are We Ready to Really Hear the Voices of Those Concerned? Lessons Learned from Listening to and Involving Children in Child and Family Psychology Research.

A changing view of children, accelerated by the Convention of the Rights of the Child (UN in Convention on the rights of the child, UN Doc. A/RES/44/25, 1989, http://www2.ohchr.org/english/law/pdf/crc.pdf ) has shifted the landscape of child and family research over the last few decades. Once viewed with low credibility and operating outside the interpretive framework of adult researchers, the rights-bearing child is increasingly recognized not only as having the capacity but also the right to participate in research. More recently, this movement has transitioned from the direct engagement of children as research participants-now considered commonplace, although less so for those who are structurally vulnerable-to the involvement of children in research design, review, conduct, and dissemination. Yet, both practical and ethical challenges remain. While children have the right to participation, they also have the right to protection. In this commentary, we set out to: (i) lay forth epistemic, child rights, and child sociology arguments for doing research about, with and by children and youth; (ii) recount our own journey of including children and youth in research to demonstrate the unique knowledge and insights gained through these approaches; and (iii) offer lessons learned on how to engage children and youth in research, including the involvement of structurally vulnerable groups.

Adaptation of the trauma group intervention 'Teaching Recovery Techniques' for online delivery: A participatory design and usability study.

Background: Video-telehealth delivery of trauma-based care is promising and may help address structural and perceptual barriers to receiving support. However, existing evidence relies heavily on samples from adult populations. There is potential to transfer existing child and adolescent trauma interventions to a video-telehealth delivery format; but, this requires careful consideration. The aim of this project was to adapt a group-based intervention called Teaching Recovery Techniques for online delivery and investigate the usability of the new intervention format. Methods: A qualitative needs assessment was performed (n = 3 intervention leaders, 4 youth), followed by participatory workshops and advisory panel consultation to generate adaptation recommendations. Usability testing was performed in two cycles; the first tested the adapted manual with intervention leaders (n = 5), and the second tested newly developed digital resources with youth (n = 5). Results: The needs assessment uncovered a number of issues that, when generating recommendations, were distilled into three topics: safety, participation and learning. Recommendations included safety rules, an emergency response protocol, communication strategies, and guidance on group composition and intervention delivery. Usability testing indicated acceptability but highlighted the need for more detailed and explicit guidance, particularly on safety processes. Discussion: The present study demonstrates the potential for delivery format to affect intervention feasibility and acceptability, and provides recommendations that can be used to guide the transfer of other group-based mental health interventions to an online format. The young people, parents and professionals involved in the project provided rich and varied perspectives, which illustrated the value of broad stakeholder engagement.

Healthcare workers' structured daily reflection on patient safety, workload and work environment in intensive care. A descriptive retrospective study.

OBJECTIVES: To describe the results of use of structured daily reflection assessments among healthcare workers at an intensive care unit over the course of one year. METHODS: In this descriptive retrospective study, data were analysed both quantitatively and qualitatively. The data encompassed 1095 work shifts, evaluated by healthcare workers at an intensive care unit using a structured daily reflection instrument. The areas evaluated were patient safety, workload and work environment, and free-text comments were possible. FINDINGS: The results showed that 36% (n = 395) of work shifts, most of them daytime shifts (44%; n = 161), were affected. Workload was the area that affected most work shifts (29%; n = 309). Missed nursing care, complex care and inaccurate communication impacted patient safety, while patient care, multitasking and working conditions affected workload. Work environment was impacted by organisational factors, environment, lack of control and moral stress. CONCLUSION: Using daily reflection among healthcare workers in the intensive care unit illuminated areas that affect patient safety, workload, and work environment. The importance of communication and collaboration and how they can impact patient safety, workload, and the work environment were highlighted by the team.

Children's Expressions of Worry During the COVID-19 Pandemic in Sweden.

OBJECTIVE: Sweden is an international exception in its public health response to the COVID-19 pandemic, with a higher number of deaths, albeit not pediatric, compared with other Nordic countries. The objective of this study was to investigate what worries children and adolescents living in Sweden expressed in relation to the pandemic. METHODS: Using an anonymous web-survey, 1,047 children (4-12 years; N = 717) and adolescents (13-18 years; N = 330) responded to five background and four open-ended questions, one of which was: Is there anything that you are worried about when it comes to 'Corona'? The responses were coded using manifest content analysis. Interrater reliability was .95, assessed on the code level. RESULTS: Worry was common (77%); mostly (60%) related to disease or death of elderly relatives, parents, the child him/herself or general worry for the elderly/risk groups. Existential worry (15%) comprised worries about the future, including economy and worries about the world perishing or the contagion becoming uncontrollable. A developmental trajectory was evident in the nature of responses. Adolescents' worries about the future included missing out on their youth and employment. They also worried about society (6%), for example, the future of democracy and the world economy. There was no indication of socioeconomic status or geographic area (urban vs. rural) affecting the presence of worrisome thoughts. CONCLUSIONS: Worry about "Corona" was common. Universal preventative mental health intervention is warranted and could be conducted in the school setting. Intervention could be tailored by age, covering discussion on financial aspects with adolescents.

Prevalence of Latent TB and Effectiveness of BCG Vaccination Against Latent Tuberculosis: An Observational Study.

OBJECTIVES: This study aimed to determine the prevalence of latent tuberculosis infection (LTBI) in immigrant children and adolescents (aged 0-17 years) living or recently arriving in Sweden. It also aimed to estimate the effectiveness of Bacillus Calmette-Guérin (BCG) against LTBI in immigrant children coming to Sweden from high-incidence countries, most of them being asylum seekers. LTBI was defined as a positive Quantiferon or a tuberculin skin test (TST) of ≥ 10 mm in small children from whom it was difficult to obtain 3 mL of blood. DESIGN: A typical BCG scar was used as a substitute for written documentation of BCG vaccination. The study comprised 1,404 immigrants aged 0-17 years. The arms and legs of all of them were inspected for a BCG scar, and Quantiferon or TST was performed. The study was a retrospective, observational, comparative cohort study. RESULTS: LTBI was found in 123 of 1,011 (12%) children with a BCG scar and in 116 of 393 (29.5%) without a BCG scar, giving an estimated vaccine effectiveness of 59%. CONCLUSIONS: LTBI was common among the immigrant children (17%). LTBI can progress to active TB and then spread in the immigrant population and to the general population if all immigrant arrivals are not tested and given prophylactic treatment if they have LTBI. The BCG vaccine was found to have a significant effect on LTBI (59%).

Evaluation of the teaching recovery techniques community-based intervention for accompanied refugee children experiencing post-traumatic stress symptoms (Accompanied refugeeS In Sweden Trial; ASsIST): study protocol for a cluster randomised controlled trial.

BACKGROUND: Refugee children have often experienced traumas and are at significant risk of developing mental health problems, such as symptoms of post-traumatic stress disorder (PTSD), depression and anxiety, which can continue for years after resettlement. The Accompanied refugeeS In Sweden Trial (ASsIST) aims to evaluate a community-based intervention, called 'Teaching Recovery Techniques' (TRT), for accompanied refugee minors experiencing PTSD symptoms. METHODS/DESIGN: A cluster randomised controlled trial will be conducted in which participants will be randomly allocated to one of the two possible arms: the intervention arm (n=113) will be offered the TRT programme and the waitlist-control arm (n=113) will receive services as usual, followed by the TRT programme around 20 weeks later. Outcome data will be collected at three points: pre-intervention (T1), post-intervention (T2; c.8 weeks after randomisation) and follow-up (T3; c.20 weeks after randomisation). ETHICS AND DISSEMINATION: Ethical approval was granted by the Regional Ethical Review Board in Uppsala (Ref. 2018/382) (24th February 2019). Results will be published in scientific journals. TRIAL REGISTRATION DETAILS: ISRCTN17754931. Prospectively registered on 4th June 2019.

Evaluation of the Teaching Recovery Techniques community-based intervention for unaccompanied refugee youth experiencing post-traumatic stress symptoms (Swedish UnaccomPanied yOuth Refugee Trial; SUPpORT): study protocol for a randomised controlled trial.

BACKGROUND: In 2015, 162,877 persons sought asylum in Sweden, 35,369 of whom were unaccompanied refugee minors (URMs). Refugee children, especially URMs, have often experienced traumas and are at significant risk of developing mental health problems, such as symptoms of post-traumatic stress disorder (PTSD), depression and anxiety, which can continue years after resettlement. The Swedish UnaccomPanied yOuth Refugee Trial (SUPpORT) aims to evaluate a community-based intervention, called Teaching Recovery Techniques (TRT), for refugee youth experiencing PTSD symptoms. METHODS/DESIGN: A randomised controlled trial will be conducted in which participants will be randomly allocated to one of two possible arms: the intervention arm (n = 109) will be offered the TRT programme, and the waitlist-control arm (n = 109) will receive services as usual, followed by the TRT programme around 20 weeks later. Outcome data will be collected at three points: pre-intervention (T1), post-intervention (T2; about 8 weeks after randomisation) and follow-up (T3; about 20 weeks after randomisation). DISCUSSION: This study will provide knowledge about the effect and efficiency of a group intervention for URMs reporting symptoms of PTSD in Sweden. TRIAL REGISTRATION: ISRCTN, ISRCTN47820795. Prospectively registered on 20 December 2018.

"I'm a Mother Who Always Tries to Give My Children Hope"-Refugee Women's Experiences of Their Children's Mental Health.

Background: The prevalence of mental health problems is high among refugee children. Childhood mental health problems have long-term negative consequences and costs both for the individual child and society. The present study aimed to explore refugee parents' experiences of their children's mental health. Methodology: A qualitative explorative study was conducted. Data were collected through semistructured interviews with nine refugee mothers who have been in Sweden less than 5 years and with at least one child in the ages 8-14 years. Data were analyzed inductively using thematic network analysis. Results: The global theme that emerged from the analysis was Navigating the moving landscape of forced migration, which described the refugee mothers' experiences of the previous adversity the family went through, the ongoing transition in the new context, and, lastly, the pathways to promote their children's mental health. Two organizing themes described mothers' and children's navigation of the forced migration: Previous adverse events and new suffering and Promoting children's well-being. Mothers described aggression and frequent conflicts, or refusal to play or eat, in their children related to living conditions at asylum centres and social isolation. This improved when children started school and possibilities of social relations increased. Mothers' own mental health and lack of language skills could also have a negative impact on the children. To focus on the present and have hope of the future was helpful to the children. Encouragement and social support from parents, teachers, and friends promoted children's well-being. Conclusion: The role of the host country in the promotion of the mental health of refugee children is emphasized. Interventions aimed to improve peer relations and reduce discrimination are needed, and these point to the school as a potential arena for positive change. Parental support groups were also mentioned as helpful in understanding the children's need for support.

Multivariable models using administrative data and biomarkers to adjust for case mix in the ICU.

BACKGROUND: Routinely collected laboratory biomarkers could improve control of confounding from disease severity in non-interventional studies of general intensive care unit (ICU) patients. Their ability to predict both short- and long-term mortality was evaluated. METHODS: The performance of age, sex, Charlson co-morbidity index, and baseline values of ten predefined blood biomarkers as predictors of 30-day and 1-year mortality was evaluated in 5505 general ICU stays. RESULTS: Regression models based on age, sex, Charlson index, and biomarkers were somewhat less accurate in predicting 30-day mortality (c-index 0.83, Brier score 0.27) compared to the SAPS II score (c-index = 0.88, Brier score = 0.09) and in predicting 1-year mortality (c-index = 0.82, Brier score = 0.31) compared to the SAPS II score (c-index = 0.85, Brier score = 0.13). Cystatin C improved predictive ability slightly compared to creatinine, but age and Charlson comorbidity index were more important predictors. Using multiple imputation to replace missing biomarker values notably improved predictive ability of the models. CONCLUSIONS: Automatically collected baseline variables are almost as predictive of both short- and long-term mortality in general ICU patients, as the SAPS II score. This can facilitate internal control of confounding in non-interventional studies of mortality using administrative data.

Xylo- and arabinoxylooligosaccharides from wheat bran by endoxylanases, utilisation by probiotic bacteria, and structural studies of the enzymes.

Xylooligosaccharides (XOS) and arabinoxylooligosaccharides (AXOS) were produced from the insoluble arabinoxylan fraction of pretreated wheat bran by endoxylanases. The glycoside hydrolase (GH) family 10 xylanases GsXyn10A from Geobacillus stearothermophilus and RmXyn10A-CM from Rhodothermus marinus produced the AXOS A3X, A2XX and A2 + 3XX in addition to XOS. RmXyn10A-CM also produced XA2 + 3XX due to its non-conserved aglycone region accommodating additional arabinose substitutions in subsite +2. The GH11 enzymes, Pentopan from Thermomyces lanuginosus and NpXyn11A from Neocallimastix patriciarum had minor structural differences affecting hydrogen bonds in subsites -3 and +3, with similar hydrolysis profiles producing XA3XX as major AXOS and minor amounts of XA2XX but different ratios of X3/X2. In vitro analysis of the prebiotic properties of (A)XOS produced by Pentopan revealed nearly complete uptake of X2 and X3 by the probiotic bacteria Lactobacillus brevis and Bifidobacterium adolescentis. In contrast to previous reports, the GH43 arabinofuranosidase BaAXHd-3 from B. adolescentis cleaved α-1,3-linked arabinose on some single substituted AXOS.

Structural Considerations on the Use of Endo-Xylanases for the Production of prebiotic Xylooligosaccharides from Biomass.

Xylooligosaccharides (XOS) have gained increased interest as prebiotics during the last years. XOS and arabinoxylooligosaccharides (AXOS) can be produced from major fractions of biomass including agricultural by-products and other low cost raw materials. Endo-xylanases are key enzymes for the production of (A)XOS from xylan. As the xylan structure is broadly diverse due to different substitutions, diverse endo-xylanases have evolved for its degradation. In this review structural and functional aspects are discussed, focusing on the potential applications of endo-xylanases in the production of differently substituted (A)XOS as emerging prebiotics, as well as their implication in the processing of the raw materials. Endo-xylanases are found in at least eight different glycoside hydrolase families (GH), and can either have a retaining or an inverting catalytic mechanism. To date, it is mainly retaining endo-xylanases that are used in applications to produce (A)XOS. Enzymes from these GH-families (mainly GH10 and GH11, and the more recently investigated GH30) are taken as prototypes to discuss substrate preferences and main products obtained. Finally, the need of new and accessory enzymes (new specificities from new families or sources) to increase the yield of different types of (A)XOS is discussed, along with in vitro tests of produced oligosaccharides and production of enzymes in GRAS organisms to facilitate use in functional food manufacturing.

Structural insights of RmXyn10A - A prebiotic-producing GH10 xylanase with a non-conserved aglycone binding region.

Hydrolysis of arabinoxylan (AX) by glycoside hydrolase family 10 (GH10) xylanases produces xylo- and arabinoxylo-oligosaccharides ((A)XOS) which have shown prebiotic effects. The thermostable GH10 xylanase RmXyn10A has shown great potential to produce (A)XOS. In this study, the structure of RmXyn10A was investigated, the catalytic module by homology modelling and site-directed mutagenesis and the arrangement of its five domains by small-angle X-ray scattering (SAXS). Substrate specificity was explored in silico by manual docking and molecular dynamic simulations. It has been shown in the literature that the glycone subsites of GH10 xylanases are well conserved and our results suggest that RmXyn10A is no exception. The aglycone subsites are less investigated, and the modelled structure of RmXyn10A suggests that loop ß6α6 in the aglycone part of the active site contains a non-conserved α-helix, which blocks the otherwise conserved space of subsite +2. This structural feature has only been observed for one other GH10 xylanase. In RmXyn10A, docking revealed two alternative binding regions, one on either side of the α-helix. However, only one was able to accommodate arabinose-substitutions and the mutation study suggests that the same region is responsible for binding XOS. Several non-conserved structural features are most likely to be responsible for providing affinity for arabinose-substitutions in subsites +1 and +2. The SAXS rigid model of the modular arrangement of RmXyn10A displays the catalytic module close to the cell-anchoring domain while the carbohydrate binding modules are further away, likely explaining the observed lack of contribution of the CBMs to activity.

Production of arabinoxylan-oligosaccharide mixtures of varying composition from rye bran by a combination of process conditions and type of xylanase.

The aim was to study arabinoxylan-oligosaccharide production from rye bran using heat pretreatment and enzymatic hydrolysis. Due to the potential application in foods, the purity of arabinoxylan was also assessed. Rye bran was heat pretreated to improve xylanase-catalyzed hydrolysis of arabinoxylan into arabinoxylan-oligosaccharides. Enzymatic removal of starch and proteins before or after heat pretreatment increased the purity, although at lower yield. The most attractive process resulted in 62% (w/w) arabinoxylan content after ethanol precipitation. Using xylanases from two glycoside hydrolase families (RmXyn10A from GH10 and Pentopan Mono BG from GH11), different mixtures of unsubstituted and arabinose-substituted xylooligosaccharides were produced. GH10 gave a higher yield of short oligosaccharides (60%w/w) with xylobiose as the main product; xylobiose and xylotriose were the main products with GH11 (40%w/w). Thus, heat pretreatment combined with enzymatic hydrolysis can be used to produce arabinoxylan-oligosaccharides from rye bran that are potentially useful in functional foods.

A carbohydrate-rich drink shortly before surgery affected IGF-I bioavailability after a total hip replacement. A double-blind placebo controlled study on 29 patients.

BACKGROUND AND AIMS: In response to surgical stress, the body reacts with a change in metabolism to a catabolic state. This is further aggravated by the fasting state preoperatively. We aimed to determine the effects on catabolism i.e., body composition and IGF-I bioavailability as measured by the serum IGF-I/IGFBP-1 ratio, of a carbohydrate rich drink given shortly before surgery. METHODS: Twenty-nine patients scheduled for a total hip replacement (THR) were randomized in a double-blind placebo-controlled pilot study to a carbohydrate-rich drink or to placebo pre-operatively. The nutritional supplementation consisted of an iso-osmolar carbohydrate-rich drink (12.5 g carbohydrates/100 ml, pH 5.0). Fasting blood samples were collected before surgery and repeated after 5 days and after 2 months. IGF-I and IGFBP-1 were determined in serum by RIA. Body composition was determined by dual energy X-ray absorptiometry (DXA). RESULTS: Compared with placebo we found a relative increase in IGF-I bioavailability post-operatively after a carbohydrate-rich drink given shortly before surgery. There were no significant longterm differences in the changes in fat or lean body mass between groups, but, in a subgroup with late scheduled surgery, there was a tendency to a difference (p=0.08) of fat loss after 2 months, with less fat loss in those who received another carbohydrate drink close to surgery. The pre-operative intake of a 200-200 x 2 ml carbohydrate drink was well tolerated and safe. There were no adverse events such as pulmonary aspiration before, during or after operation. CONCLUSIONS: A carbohydrate- rich drink given shortly before surgery increases IGF-I bioavailability post-operatively in patients undergoing a THR, but has no significant effects on body composition after 2 months in physically active people. We suggest that, if the operation is postponed for more than four hours on the same day, an additional carbohydrate drink should be given.